Family Relationships After Genetic Testing

If you or any family members test positive for BRCA1, BRCA2, or another cancer-related mutation, you have some important decisions to make about what to do with the information. But not everyone is likely to make the same decision.

If you’ve already had breast cancer, you might be eager to see your relatives do everything they can to protect themselves: have more frequent screenings, take risk-reducing medications, or have prophylactic mastectomy (removal of the breasts). And if you’re at increased risk for other types of cancer, you might be considering ways to prevent them or increase the odds of early detection.

However, everyone looks at cancer risk a little bit differently. Some relatives may choose to do nothing, either because they’re not that concerned or they just aren’t ready to take action yet. Maybe they haven't come to terms with what it means to have a mutation associated with cancer risk. For younger women with a BRCA mutation, having surgery to remove the breasts or ovaries can seem like a drastic measure. This can cause conflict with those who see surgery as a “must-do.”

Attitudes can be shaped by the family’s overall experience with cancer, too. If many relatives had breast cancer (and maybe other types of cancer) and are doing well, then others might reason that, if they get cancer, they will do well, too. But if cancer took many lives, especially at young ages, relatives who have the mutation might be more eager to take action.

Different physicians also think differently about managing risk. Some are comfortable following high-risk women with screenings and risk-reducing medications such as tamoxifen. Others may lean more heavily toward preventive surgery. That too can play a role in women’s decisions.

Everyone has to make sense of the information for themselves and choose what to do with it. It might be hard to accept others’ choices when they differ from yours. There’s nothing wrong with occasionally reminding your relatives that they have options to reduce their risk. You also can touch base with any family members who refused testing, in case they ever reconsider. Andrea Forman, MS, LCGC, a genetic counselor at Fox Chase Cancer Center in Philadelphia, PA, notes that some of her patients have dropped their test results and a copy of the family tree into the mail to relatives, just so they have the information. But at some level, you have to accept their choices, and they yours.